Farewell 2007

This is it. I’m closing the door on 2007 and looking forward to the New Year. This has been the hardest year of my entire life and I’ve come out of it wiser and stronger. I look back and sometimes can’t imagine that I went through all of that, like it didn’t happen to me but I see my short hair and some lingering scars from the IJ lines and know it DID happen. Looking back at emails to friends before April, I knew something was wrong and I was scared of my echo cardiogram, without knowing why. I wrote about my hands shaking so much I could barely put my contacts in the morning of the test and I didn’t know how serious the results of that test would be – it blows me away to read that email now.

Not all of 2007 was bad, even though it does seem that way. At Christmas, my brother-in-law, Brian said he went to Thanksgiving dinner at a friend’s house and their tradition is for each person around the table to say what he or she is thankful for. He said he was thankful for my health, and his statement nearly brought tears to my eyes.

It made me think of what I am thankful for and things I could really have done without this year.

I could have done without:

• Priscilla trying to kick my butt – she’s not a very nice tumor
• Many, many needle sticks to draw blood, IVs, etc. – NOT FUN
• Cancer touching the lives of friends
• Weight loss of nearly 25 lbs
• Losing all my darn long naturally curly hair
• Cousin Gina’s health problems

I am grateful and thankful for:

• Kicking Priscilla’s butt: ding dong, Priscilla’s DEAD!!
• Awesome nurses and doctors at NIH
• FREE health care through NIH
• Chocolate croissants
• Ice cream
• A successful 3-month check-up and surprise party afterwards
• Friends, family, and co-workers supporting us throughout the difficult times
• My new sister-in-law: Shaunda and Michael were married in February
• Receiving donations from friends, family, and co-workers for the American Cancer Society’s Relay for Life
• Good movies and books to occupy my time
• Gina’s good health at year's end
• Janine's remission - you go girl!
• The return of my hair, eyelashes, and eyebrows
• Honoring other cancer survivors at the Light the Night Walk for Leukemia & Lymphoma Society
• Celebrating our 9th Wedding Anniversary in August and rejoicing over being cancer-free with a trip to the Outer Banks
• Celebrating Christmas in Texas; visiting both our families; doing the San Antonio River Walk; enjoying fresh guacamole at Boudros; soaking in the hot tub; and eating fine BBQ at Austin’s Salt Lick restaurant
• Team in Training triathlon for Mike
• Sharing happy news with friends and family: A Christmas engagement for Mike’s mom and a much-hoped for pregnancy for close friends

HAPPY NEW YEAR! May 2008 bring joy, happiness, and good health to all!

“Let us rise up and be thankful, for if we didn’t learn a lot today, at least we learned a little, and if we didn’t learn a little, at least we didn’t get sick, and if we got sick, at least we didn’t die; so, let us all be thankful.”

-Siddhartha (the founder of Buddhism)

Run, Run Rudolph

Mike has decided to do a triathlon in 2008 for the Leukemia and Lymphoma Society (LLS) through their Team in Training (TNT) program. You read that correctly: he'll be consecutively swimming 1.5k, biking 40k, and running 10k. I am both immensely proud of him and awed by his decision because he is pushing himself really hard to help cancer patients like me. TNT offers several marathons and triathlons a year and he'll be competing in the Capital of Texas Triathlon in Austin, TX on May 25, 2008. This triathlon is a fundraiser for the LLS and he needs to raise $4,200 to participate, which is not easy but we're going to fund raise like crazy to get the money. Mike is using TNTs trainers to prepare him for the event and he's off right now swimming and when he gets home, he's going to bike in our living room on the bike trainer we purchased last week. Check out his blog (listed to the right) to learn about his training efforts for this event. He also has a link to his donation page if you are so inclined to make a donation. :)

We are heading to Austin tomorrow for Christmas. We're staying with my mother-in-law, Gail but are also visiting my cousin Gina and her family. Mike's brother, Brian is coming from Miami for the holidays. My cousin Hunter lives just outside of Austin so I'm hoping to catch up with him at the Salt Lick, a really cool BBQ place with all-you-can-eat meat! We went with Gail last summer and had a great time. I will also get to visit my Grandma, Uncle Robert, Aunt Kathy, and possibly my cousin Heston in San Antonio since it's only an hour from Austin. I will certainly be a traveling fool next week, but I'm really looking forward to spending time with Mike's family and mine.

I wonder what my Grandma will say about my short hair? She doesn't know I had cancer because she has Alzheimer's and we thought it best not to tell her and stress her out about it. I may just tell her I decided to cut my hair really short, if she even recognizes me at all. I saw her last summer and she recognized me, but she is forgetful and she may not remember me anymore. I will be sad if it happens.

I had blood work yesterday after my two GCF shots and I'm not neutropenic - hallelujah! I need to go back after my trip to make sure my white counts are stabilized, but I don't need to bring my two vials of GCF to Texas with me. I also feel a lot better about traveling, although I will wear a mask on the plane so I don't get sick. I'm not looking forward to wearing it for four hours, but I'd rather not put myself at risk.

Have a Merry Christmas, everyone. I'll try to post my adventures in Texas.

Freerice.com

The other night Angela and I had some family members over for hot chocolate and Angela's aunt Anne mentioned a neat website, called freerice.com. It is a really great idea....a vocab game that actually helps people! Play here and donate 20 grains of rice through the United Nations to help fight World Hunger. It is easy and educational!

Merry Christmas to Me

Today was the big day. Mom called me before I left to tell me she had spoken with the head of my clinic, Kim, because Kim had come into the outpatient unit where my mom works for some routine blood work. Kim assured mom that George, who performs the procedure, is excellent and he is not the other cranky George I had dealt with in another department. Mom's friend Jeannie, the head of my day hospital, also said she'd stop by today to check on me. It's night to have connections in high places.

I arrived at NIH early to pick up my anti-anxiety meds, which I promptly took as soon as we left the pharmacy and I found a water fountain. I had also begged Mike to take me to Starbucks beforehand so I had my grande skim chai latte with me as well. Jeannie, one of my really nice nurses, and Doug (my NP) met me at the front desk and said they'd page George. We chit chatted up front for a bit and then we went back to one of the rooms so I could get the show on the road. While the nurse was taking my vitals, Doug came in and said we probably didn't need to do the biopsy today. What?! He said Dr. Dunleavy and Dr. Wilson had been out on Monday when he had ordered the biopsy as a precaution. After talking with them this morning, they decided to simply send me down to phlebotomy for some blood work and check things out that way. I eagerly jumped up from the hospital bed and told Doug, "I love you!" I would prefer that Doug did exactly what he did - schedule the biopsy just in case but I am very glad it was cancelled today. It doesn't mean I won't need the procedure in the future, especially is my white blood cells don't rally together and start multiplying.

We trekked back downstairs and I had my blood drawn from one of the other techs since all my favorites were out or on vacation. Wesley was there, but the front desk said he wasn't on call (he was) so he chatted with me while my tech drew the blood. Afterwards, we went to the blood bank so Mike could donate blood since they had called looking for him yesterday (vampires!)

We went back to the day hospital to wait for the results. My white counts came back really low and I'm actually neutropenic, which means I need to stay away from sick people and wear a mask if I'm around anyone who might be sick. I was also given a prescription for GCF shots, which I will need twice a week for the next two weeks. Mike gave me my first one when we got home from NIH. The nurse told me to wear a mask walking around NIH and to avoid crowds, but Doug told me not to be that extreme and just wear one if someone's sick. He also cleared me to go climbing tomorrow.

A friend suggested that my white blood cells are not behaving because they have been unclear on their mission. She recommended I sit down with them, give them a good outline of their goals and objectives over the next 60 or so years, and outline their benchmarks of success for the next few quarters. I might have a much better result if I do this and possibly work out an incentive plan for them, such as offering them a spring break trip to the Bahamas. After thinking about it, I sat down with my white blood cells early this morning and told them their acceptable range and told them I fully expect them to be in the middle of the range from here on out. No excuses. We then put all hands in and on the count of three, we yelled, "One, Two, Three, Reproduce! Go Team!" I think things should be much better now. I've got my eye on them and they know what I expect. I've given them performance objectives and I expect them to succeed. I will not accept white blood cell failures. C'mon fellas, we're all on the same team. Let's go team!

It's Never Easy

I went to NIH today to have some blood work done because my white counts were a little low at my last check-up. Doug (my Nurse Practitioner) called a bit ago and said my white counts are even lower than they were then and they want to do a bone marrow biopsy to see what's going on. I scheduled it for this Thursday and I'm very, very, very nervous about the procedure. I had one done back in April and it wasn't too bad, but the thought still bothers me. I scheduled the procedure with the best person at NIH. I've heard a lot about this guy and everyone brags about how wonderful he is and how people don't feel a thing. I hope it's true because I'm about to find out. I asked for a prescription of sedatives to take the edge off my nerves. I'll take a sick day at work because my back ached after the procedure last time and I don't need to be at work feeling loopy from the sedatives with a back ache.

I bet you're all wondering what this means, and I asked that question. Doug doesn't think the cancer has returned (yay!), but this could be a result of the rituximab (one of the chemo drugs). After the biopsy, they'll figure out the course of action and I may end up getting GCF shots again for a while. This means Mike gets to be my caretaker again and stick me with a needle for a few weeks. Please pray that everything turns out fine and that I don't freak out with the biopsy and that all I will need is a few weeks of GCF shots to get my white counts up and at 'em. All I want for Christmas is to put this nightmare behind me and move forward with a long, happy, HEALTHY life.

Walkin' In a Winter Wonderland

The ground outside is blanketed in white from our 3.5 inches of snow yesterday. I never believe the weather predictions, so when Riley and I went outside at 6am I was surprised to see tiny little flakes falling from the sky. It wasn't enough for me to worry about so I didn't watch the traffic report as closely as I should have. When we left for work nearly 40 minutes later, there was more snow on the roads than I expected. It turned out to be a nasty mess on the highway. We crawled down 270 for more than an hour and only made it about 5 miles before turning around to head home. The northbound side was much worse because there were fewer cars on the road and much more ice. I saw one car almost slide into the jersey wall simply because she changed lanes and started sliding. Once we got home, I was able to sit and enjoy the snow falling from the sky. It snowed all day, leaving us with a winter wonderland.

I will say one thing, all this snow has put me in the Christmas mood. One radio station plays Christmas music around the clock from Thanksgiving to Christmas day and I'm ready to listen to it now. I've heard the Chipmunk Song and I'm a happy girl! All I need now is Bing Crosby's White Christmas, Elvis' Blue Christmas, or Silent Night by almost any artist (I have to admit the Clay Aiken version I heard the other day was pretty good). It's hard not to have the Christmas spirit between the snow and Christmas decorations all around.

Christmas means so much more to me this year and I have been blessed with God's grace to be healthy once again. I continue to have small struggles, but each day I grow stronger and healthier and more able to do things I couldn't do even three months ago. I have gained nearly all of my weight lost (all of this holiday eating is helping). I could say several months ago that all I wanted for Christmas was my health back, and I am certainly on my way. It feels awesome.

Finally, if you want to see me dance, check out this link:
http://www.scroogeyourself.com/?id=1171437112
I laughed out loud when I saw it!

Sadness

Today has been a day of sadness and loss. My co-worker Fred's dear wife, Lucy, lost her valiant fight against cancer early Saturday. I learned of her passing this morning. She was a courageous woman who battled cancer valiantly for 17 years and offered me words of encouragement and hope when I needed it most. What is so difficult is knowing how much Fred loved her and will miss her because it was evident and everyone at work knew it. I am praying for Fred and his family and hope that they will find comfort in each other during this difficult time. It is my sincerest hope that Lucy is in heaven and is suffering no more.

My office was again saddened to learn of the sudden death of another co-worker. Vickie didn't show up for work this morning, and someone called to check on her and heard the terrible knews that she had passed away. She didn't show up for Thanksgiving and her family went to her house to check on her and found her. I am shocked as I just spoke to her on Tuesday. Vickie had been helping me to resolve a problem I've been having with my flexible spending account plan and had in fact finally resolved the problem the week before.

Both of these events reinforce how short life really is and we never know how long or short it can be. Make every second count. I caught Alicia Keys on the Tyra Banks show on our tv in the lunchroom at work today and one of the lines from her new song is, "Love me like you'll never see me again" and it really strikes a chord with me. The whole song is beautiful and poignant.

I saw a poem this morning on my cancer online discussion forum. It's by e.e. cummings. I never liked cummings in college because I usually couldn't understand his style or get his meaning most of the time, but the poem speaks to me and my own personal story of surviving cancer.

i thank You God for most this amazing
day: for the leaping greenly spirits of trees
and a blue true dream of sky; and for everything
which is natural which is infinite which is yes

(i who have died am alive again today,
and this is the sun's birthday;this is the birth
day of life and love and wings:and of the gay
great happening illimitably earth)

how should tasting touching hearing seeing
breathing any--lifted from the no
of all nothing--human merely being
doubt unimaginable You?

(now the ears of my ears awake and
now the eyes of my eyes are opened)
-e.e. cummings

So Thankful

As Thanksgiving 2007 approaches, I am both reflective and grateful for my recent good news. I am so grateful for family and good friends who have struggled with me, cheered me on, supported me, and came to my aid whenever Mike or I needed a hand. You all have been amazing and for that I am thankful. I am also thankful for the strangers and store clerks who have stopped to talk with me, provide encouragement, or offer their own stories of courage and hope.

Mike is so amazing. He planned a surprise party for me last Friday to celebrate my good news and went to several extremes to plan it, including "accidentally" forgetting his cell phone in his truck when we dropped it off last week to hook up the snow plow equipment so he could call my relatives. Melissa came over Friday to "watch a movie" when suddenly other people just "showed up." I was especially surprised and touched that Grandma Erickson came with Aunt Anne because she doesn't like to travel or be out too late at night. Mike organized people to bring over platters of food, beverages, bags of ice, and a cake for me. We celebrated the good news until late Friday night. I wonder what he'll do for my 6-month checkup? :)

I Aced My Test!

Today was it - the big day. I went to NIH this morning for my first 3-month CT scan and check-up and I am happy to say I passed the test with flying colors! I have some scar tissue left over, but it shrank a little since my last CT and the doctors are very happy with the results thus far. I have been a little nervous about today and it's been on my mind a lot lately. I was trying to prepare myself for bad news, but in the end decided to just think positive thoughts and pray really hard for good results. I am very thankful for my doctors at NIH and my continuing to be in good health.

I asked the doctor about the tingling in my feet and he said it's actually a little unusual for them to still be numb three months later, but the feeling could return to normal in six months to a year so I have to wait and see. I've been having really bad hot flashes, but they weren't able to offer any suggestions for that other than to try flax seed which is supposed to help. Apparently I have a slight fungus in my fingernails and toenails so I need to get some over the counter cream to resolve that issue. These are minor things compared to what I've been through so I will just deal with them and move on. My goal is to play volleyball in the spring, so if my feet are still numb I'm going to have to work around that and figure out some way to compensate.

I ran into Steven, my chemo buddy from Ohio and he looks really good too. I think he's gained back some of the weight he lost. He said he's been feeling well and I hope his results are as good as mine. I also saw a lot of my nurses who have transferred from working in the day hospital to the clinic. My white counts were a little low so I had to go to the day hospital for a shot of neulasta and I saw some more nurses there. I also made a trip to the inpatient unit to see my favorite nurse, Amy. It was a good day overall (well, except for having to get an IV, blood drawn, and a shot).

The Ears Have It

This past weekend I attended the Maryland Jaycees Fall Convention - my first convention since I was diagnosed. I received a warm welcome from everyone and many people went out of their way to congratulate me or say hi. I received hugs from everyone and I am truly touched that so many people care about me and I can honestly say that Jaycees have become my extended family.

It's a long story, but basically I "lost a bet" many years ago and my penalty was to wear bunny ears and sing "Little Bunny Foo Foo" at a public restaurant to my Jaycee chapter members. From there the word spread in the Maryland Jaycees and I was made to sing "Bunny Foo Foo" at several state conventions. Despite the fact that I come from a long line of very good singers, I did not inherit that gene and I am terrible. I'm a good sport, though so I donned the bunny ears and sang my heart out. Now I'm known as "Foo Foo" around the state.

My friend Blair is on the state board of directors and he asked if I would escort him in to the banquet Saturday night and I agreed. He jokingly asked if I would wear bunny ears and I said I would, but he didn't believe me. Moments before we were to walk in he realized I was serious, and ran to his car to get the bunny ears. When it was our turn to be announced, I put on the bunny ears and rendered the emcee momentarily speechless. She regained her composure and announced, "I've never been so happy to welcome Bunny Foo Foo" and the entire room burst into applause and some took pictures. It was wonderful to be welcomed like that and I am so happy to be back in the Maryland Jaycees.

Earlier that day, I was one of the presenters at the Cancer Awareness Forum. Janine Layman, a former Maryland Jaycee who moved to Florida several years ago, was diagnosed with a rare form of cancer earlier this year too. Jen Ray's brother, who I've mentioned here, is battling colon cancer. Janine contacted Jen and I a couple of months ago to ask if we would participate in this forum and each share our story. Well we agreed and conducted the seminar this past weekend. I am humbled by the large turnout and the many, many Jaycees who came out to support us and listen to our stories. I was nervous before we started, but once I got started on my story I was confident (and talked more than my allotted 10 minutes!) The Jaycees care and I was hugged and congratulated all weekend. It was amazing and awesome to be loved and supported by so many.

John Schissler, a long-time friend, gave me a Daffodil Days teddy bear from the American Cancer Society that he'd been planning to give me for a long time and said he plans to give me one every year. I look forward to received a special bear every year - this means I plan to be around to receive it.

Nurses are the Best!

I received an email from one of the clinical nurses at NIH who happens to know my mom and was visiting her today at the hospital where she works. Janelle came to meet me once in the clinic and she is an inspiration as she is a cancer survivor too. She's very familiar with my team and loves Dr. Wilson and all that they are doing for their patients, which is very wonderful to hear.

Janelle wrote me because I had mentioned another friend's brother who has colon cancer to my mom and Janelle wanted me to know that she has a trial at NIH for colon cancer. She wanted me to know so I could pass the word on to Jen, which I immediately did. I hope that Janelle's trial can help Christopher. That would be awesome if it could. I am so happy mom remembered my conversation and told Janelle about it. I have been praying for Christopher and hoping for the best. This would be truly good news.

I'm going to my Jaycees convention this weekend and tomorrow I'm a speaker for a Cancer Awareness Forum and I'm going to talk about how I discovered I had cancer and then my experience with clinical trials. I also plan to wrap up with some information about healthy eating and paying attention to our bodies when something isn't right. Janine, who was also diagnosed this year with cancer, came up with the idea and she's flying up from where she lives in Florida to also present. Jen will be talking about her experiences as a caregiver. Jen had arranged for someone from the American Cancer Society to also present some information, but she can't make it now so the three of us will have to do our best to talk about it. I think we'll be fine.

I'm excited because I haven't attended a convention since February. In February, my chapter received the highly-coveted Giessenbier award for being the best in the Maryland Jaycees. I also received the Junior Chamber International Senate award, which is the highest honor a Jaycee can receive. I also received a bunch of awards for other things. My last convention was an amazing event. It will be so nice to see everyone again after a long, long haul of chemo treatments. I'm looking forward to it all.

Going to the Chapel

My high school friend, Tara Colligan got married in New Rochelle (or was it White Plains?) NY two weekends ago and we drove up with Kathy to celebrate with Tara. I had eagerly accepted Tara's invitation to be a bridesmaid, but once I found out I had cancer I stepped down because I didn't know how sick I was going to be by October. Thankfully, I've been feeling much better and I've put some weight back on and my energy level is higher than it has been so I was able to go and participate in the festivities as simply a guest.

We've had a drought here for several months, so wouldn't you know it that it started raining before Tara's wedding and continued to rain the next day. In fact, it rained all the way up to NY and then all the way back down and stopped just as we crossed the state line back into Maryland. I'll be an optimist and believe that rain is good luck for the bride and we desperately needed rain too.

The wedding was beautiful and the ceremony took place in a very old Catholic church with beautiful stained glass windows and great big marble columns in the middle of the pews. Tara was a beautiful bride and was stunning as she made her entrance into the church. I am not Catholic, but I've attended several full Catholic masses and I still couldn't seem to figure out when to sit, stand, or kneel during the ceremony! Luckily we got to the church late (rain and traffic) so we sat in the back and I didn't embarrass myself in front of everyone. Mike said I was worse than a 2 year old because I kept fidgeting in my seat.

The reception was amazing. I've never seen so much good food in my life and it tasted incredible. When we arrived at the reception, we were ushered into a large room with a variety of food stations all around, including prime rib, ham, and turkey; chips, salsa, homemade guacamole, and quesadillas; a pasta station with three types of pasta; cheese, crackers, and fruit; and a seafood station. Wait staff also provided coconut shrimp and caramelized onions in a pastry that were awesome. I was completely content to stay there, but there was more to come in the way of a full dinner upstairs!

The formal reception was a lot of fun. Tara segregated the activities really well. We had our first course of salad and then the DJ started off the evening with Motown. Our second course was followed by disco. Our main course of sirloin steak, chicken, or salmon was followed by a mix of 80s and modern music. I saved room for dessert because it was chocolate mousse with ice cream and raspberry sauce and wedding cake. The chocolate mousse was so incredible. Mike typically gets bored at weddings, but we stayed until the bitter end, which was midnight. It was so much fun being able to dance after all these months. My feet felt like lead from the neuropathy, but I was out there doing my best to boogie. I was so happy to be able to celebrate Tara's wedding with her and her new husband, Greg. Tara's mom's husband died several months ago of pancreatic cancer so they made a donation in his memory, which was so sweet. Tara and Greg included their families by playing, "We are Family" in honor of family who traveled so far to be with them. Several relatives had flown over from Ireland so the evening ended with several Irish songs in their honor. It was great to be included and celebrate something so joyous as a wedding.

Okotberfest!

We participated in a cooking class last night at the local L'Academie de Cuisine and it was Oktoberfest in the kitchen. Our menu consisted of onion tarts, potato pancakes, sweet and sour kraut, chicken schnitzel, bratwurst, and German chocolate cake with homemade cherry ice cream. Our instructor hails from Wisconsin and he was full of useful information and demonstrated how to dice an onion, which is something I struggle with.

We were divided into groups of three or four and then we discussed which menu item we would like to make. I decided to make the schnitzel and Mike made the potato pancakes and stuffed the bratwurst meat into the casings. Our table mates made the chocolate cake and the kraut. Because it was too time-consuming, the instructor and classroom volunteers made the rest of the menu items.

My first job was to chop the chicken into small chunks and then flatten each piece. I used the back of my fry pan to give them a good whack, but Mike took over because I wasn't hitting them hard enough. I took over his dish while he smacked my chicken around. Then I had to wait in line behind slow people who delicately dipped their chicken one piece at a time in the flour, egg, and bread crumb mixture. I thought we'd be there all night just for the chicken! I was much quicker as I dumped all my chicken into the flour and then got on with the rest of the process. I was finally able to actually cook my chicken and each piece came out with a lovely golden brown color.

The pots of cooking food gave off an amazing aroma of flavorful foods that we couldn't wait to eat. When it was finally time, we all dug in and the food was amazing. I could easily see myself replicating almost all of the dishes except the bratwurst because I don't have a sausage maker at home. The sweet and saur kraut was delicious and very different because the cranberry, chopped onion, and apple gave it a slightly sweeter taste without the sharp bite of typical sauerkraut. The schnitzel was very tasty and I ate it German-style with squeezed lemon juice on top. The potato pancakes were very good with bits of parsley and onion throughout. The best part was the cake and ice cream. It was a very good night. I'd like to take another class, but it will have to wait as most of their classes through December are already full.

I'm leaving momentarily for the Light the Night walk. It rained hard last night, but it's looking very good weather-wise for tonight. I'm looking forward to the walk and the Hard Times chili afterwards!

Doctor, Doctor!

I almost took a trip to the emergency room last night: I had a sore throat all day that got worse last night. After work I went to my parent's house to clean (so Mike could get into the master bathroom to finish it after Michael stopped in the middle of remodeling it) and their house is very dusty. I felt a little worse after being there for nearly two hours, but not that bad so I went to my water aerobics class. As soon as I got in the water, I felt a searing pain in my throat and it was difficult to breathe. I did one lap around the pool, but decided to get out. I sat on the side and watched Melissa finish class and hoped the pain would go away, but it didn't. The pain was unusual in that it hurt to inhale but not exhale, and I didn't have shortness of breath. It was definitely in my throat and not in my chest.

One of my fellow classmates is a doctor and he suggested I call my doctor right away and not wait until morning. Melissa followed me home and I called NIH because I don't know who to contact anymore since I'm not officially a patient anymore. I was interviewed the nurse on-call and she was a little grumpy about whether or not I should go to the ER, but she took my number for the doctor on-call to call me. The doctor on-call interviewed me and said I could wait to go to my primary care physician for a throat culture because he said I didn't sound that terrible on the phone (my breathing was normal and I wasn't having trouble swallowing).

I felt better this morning, but called my doctor anyway and scheduled an appointment for today. Dr. O'Connor took a throat culture (boy, that was fun having a cotton swab shoved down my throat) and the preliminary in-office results were negative for strep throat, but she is sending the other swab out for testing. She didn't think it would be strep, but it could be allergies and a combination of the dust and the pool may have caused a reaction. Since my immune system is weak, any minor cold or allergy will be blown significantly out of proportion. I'm supposed to keep an eye on things and call if I get worse.

Mike also joined me at the doctor's office because his ankle has been swollen for several weeks and he saw an orthopedic doctor on Friday who recommended he get a Lyme disease test just to rule that out. His doctor took x-rays and didn't see anything that could be causing his ankle to swell, but a symptom of Lyme disease could be swollen ankles. Dr. O'Connor wrote orders for his lab work but didn't think it's Lyme disease. She thinks he may have re-aggravated an old injury from years ago and it's just reappearing now. I just hope it goes away soon because he hasn't been able to play volleyball as much. My ankle (from my sprain last week) is still sore, but it's getting better. Mike and I make a great couple right now - two swollen ankles!

Light the Night

October is breast cancer awareness month and I'm jealous that breast cancer gets its own month, a pretty pink ribbon, and lots of national attention. Not many people know about non-hodgkins lymphoma and I would have preferred not to have such intimate knowledge of the subject, but unfortunately I do and that's that. I may not have my own month or a pretty ribbon, but the Leukemia & Lymphoma Society has a Light the Night Walk and it's this Saturday, October 20th at the Rockville Town Center.

It's a two-mile twilight walk during which participants carry illuminated balloons to celebrate and commemorate lives touched by blood cancer (leukemia and lymphomas). Supporters carry red balloons, patients and survivors carry white balloons while gold balloons commemorate lives lost to cancer. Together, they "light the night" and truly brighten the future for millions of patients and their families.

Check in for the Walk begins at 5:30pm, the stage program will start at 6:45pm and the Walk will begin promptly at 7:00pm. I'm meeting the Jaycees and my family at 5:15 in front of the movie theater. If you live close by, you're welcome to join us.

To join my team:
1. Go to the website: http://register.lightthenight.org/LTNRegistration/app
2. Select Join Team
3. Search by Team Name: AM Victory or Team Captain: Janice Erickson (my mom)
4. Register

To make a donation, go to my website: http://www.active.com/donate/ltnAlexan/2073_Priscilla07

Your support means a lot to me and to many others. Thank you.

Twist and Shout

Today is holiday for me, but I had to work from home on a writing assignment that's due tomorrow by close of business. I took a break this afternoon to work out with my personal trainer, or actually Ludmilla, the new physical therapist because my regular trainer, Tom, took today off. I was doing pretty good and even added jumping jacks and bunny hops to my repertoire, even though I couldn't jump very well. Disaster struck on the hurdles. Mind you, I wasn't jumping any hurdles but I was walking over each one. As I was lifting my leg over a hurdle, my heel caught on the edge and I started falling. Since my balance is not very good I couldn't right myself and I kept on going, knocking down two more hurdles in the process and twisting my ankle. The pain was excruciating and she quickly put ice on my ankle and had me elevate my leg. Another physical therapist was there and he did a quick assessment to make sure I hadn't fractured anything. I didn't feel anything pop when I went down, but I definitely twisted it good.

It's almost 10pm now and my ankle still hurts - a lot. I've been icing and elevating my leg off and on all day. It's hard to tell how bad it is because my ankles have already been swollen for weeks, although my left ankle is a bit more swollen than my right ankle. I called NIH today anyway and left a message because of the fact that my ankles have been swollen for so long and the bottom of my feet feel numb too. Spraining my ankle today is just icing on the cake.

Check out those pearly whites

I'd been noticing that my teeth were discolored and yellowish looking and I thought it was yet another chemo side effect that I was going to have to deal with at some point. I didn't know if I could make it go away or not. I saw the dentist today and she took one look and thought she could scrape it away. Lo and behold, she did! I've never been so happy to see my dentist.

I grabbed dinner with a friend before her volleyball game with Mike. Theresa's mom had breast cancer some time ago and I've met her mom on several occasions. Her mom's having some health problems recently and found a lump in her other breast, in her throat, and in her liver. Theresa's understandably worried and stressed so I wanted to have dinner just to see how she's doing. Theresa asked if I had joined a support group, which I haven't done yet. I met someone who belongs to a breast cancer support group and invited me to join them on their next dinner outing. I asked if it mattered that I didn't have breast cancer, and it doesn't so I may join them. I invited Theresa and her mom to come too. Theresa should also look for a caregivers support group and I'll check through some of my resources to see if I can find her something.

Hearing all of these cancer stories makes me sad. I feel so helpless and I wish there was something I could actually do. For now I will listen to their stories and offer as much comfort as I possibly can. I wish I could do more.

Seasons of Change

I can't believe tomorrow is October. It's starting to feel a little like fall around here with the cooler temperatures at night and the changing leaves on the trees. I have mixed emotions about the coming season because I feel a little gypped from not really having much of a summer this year. Each year, at the beginning of summer I think about all the things I want to do before the fall. I don't always do the things I think I'm going to do (I never seem to hit the pool as often as I would like), but this year I didn't even make plans or daydream about long, lazy summer days spent outdoors. Maybe I should stop watching those Country Time lemonade commercials because I always get a touch of nostalgia for my youth! Next year I plan to do summer right. I don't know what that means just now, but I will enjoy it instead of seeing it from my couch or a hospital bed. Meanwhile, I will plan on enjoying fall and seeing the leaves turn colors before it gets downright cold in winter. One season at a time!

My eyebrows are back! I am so glad to see them and my little baby eyelashes too. I'm also starting to get a little peach fuzz on my head and maybe soon I'll look like Demi Moore in "G.I. Jane". I'll look like a touch chick then!

Mike's boat is being fixed today and hopefully it will get done before Eric leaves the lake because he said he'll tow it back here for us if it's ready. We'll have to test it on the Potomac River when it is ready because we won't be able to get back to the lake for a while. October is a busy month for us with lots going on each weekend, but we can definitely take it down to the river for a weekend afternoon and drop it in by National airport. I love boating on the Potomac (not swimming - ewwww) because it's so amazing to see all of the monuments from the water. We usually head down towards Mount Vernon and then over to a small marina for lunch. Last year we went really far down the river with Kathy and Robert near Quantico, VA. I hope it is fixed so Mike can test it before he has to winterize it.

The Lake is a Jinx!

We took to our boat to Smith Mountain Lake last September and stayed with Eric & Denise and his parents at their lake house. All of us were in the boat on our way over to the marina for lunch, and we sucked up gravel into the intake because the water was so low and blew the engine. It was so sad because we just bought the boat last spring.

We went back to SML last weekend with Eric's family and were ready to have a great time on the water. We spent Saturday morning on Eric's boat and then Mike went to get his boat and pick up Eric's family from the house so we could all go to lunch at the marina. Mike came out of the cove with everyone on board (I was on Eric's boat) and said that his boat was taking on water. Eric and I could see the back end of our boat slowly sinking and he quickly got everyone off our boat onto his boat. Eric and Mike took our boat back to the house so they could put it up on their lift and get it out of the water ASAP. Denise hung out in the main channel with Eric's boat while we waited for the guys to come back on their pontoon boat so we could still go to lunch.

On Sunday, Mike and Eric pulled our boat out of the water and put it on the trailer so they could take it to Eric's local mechanic where it could be fixed. They spent the morning trying to diagnose the problem first and concluded that there's a hole in one of the tubes, as opposed to a cracked hull. We don't know what's wrong with the boat right now because the mechanic was in Miami last week at a boat show, but hopefully he can fix it soon. We'll have to drive back down there (five hours) to get it, but Mike wants to take it out on the water to test it.

Sunday afternoon when we were all leaving, we got in our truck to go and it wouldn't start. We first thought it was a dead battery but it wasn't. We didn't know what was wrong with it or how long it would take to fix it. Mike and Eric decided to stay behind and work on the truck and I rode home with Denise and the kids. It turned out to be a problem with the starter and they just had to go pick up a new starter kit from the store, which luckily was open on Sunday. It took them about 20 minutes to replace it and then they came home.

We did have a fun weekend, despite the back luck. I've concluded that SML is a jinx for us and our boat! It could also be that we shouldn't take the boat to the marina for lunch because each time we've done that something happened to the boat. I never got to try water skiing, but it was awfully chilly last weekend and I didn't need to get sick trying. We relaxed and enjoyed ourselves as much as possible and I caught up on one of my books. Maybe next time, we can actually use our boat!

Say a Little Prayer

I am requesting your prayers and hopes for someone you probably don't know - Christopher Hodorvich. He is a friend's brother and he has stage IIIC colon cancer and he's already gone through one round of chemo, but a CT scan in August revealed that his cancer was growing. Tuesday's PET scan showed that the cancer has spread and is not operable at this point. He'll begin another round of chemo on Oct. 2nd. His oncologist stated that the chemo will not cure the cancer, but the hope is to shrink the cancer to where they may be able to remove it through surgery. He feels that Christopher's ability to be a candidate for surgery is a long shot, but miracles can happen. Christopher's sister, Jen, sent out an email to all the Jaycees today asking for our prayers and asking us to add her brother to our churches' prayer lists. I thought I'd extend the request out to my blog readers. Think of Jen too because she's going through a lot and this has got to be hard.

I am working on building up my strength by working out with my personal trainer twice a week and going back to my water aerobics class. I really struggle with balancing, jumping, and running. Tom, my trainer, had me jump two-footed over 6 inch hurdles yesterday and I really struggled with it. I used to be able to jump over 24 inch hurdles (and was quite proud of this), but my vertical leap definitely suffered. I can't quite explain it, but my brain really struggled with getting my lower body to cooperate and jump over the hurdles. It was really strange.

My water aerobics classmates greeted me enthusiasticaly on Tuesday with cheers and applause. I was really touched and teared up a bit when I saw them. I haven't seen any of them since the end of March and the last time I was in class, I was really winded. I did pretty good and kept up, when I wasn't too busy chatting with everyone. Next week will be time to get serious! I wore my swim cap because I'm too self-conscious about my bald head out in public. I wear my bandanna with no problem, but I can't bring myself to be without something on my head. I'm just so glad to be back at the pool.

New Predicaments

Mike and Melissa think my hair is starting to grow in a little (but it's such a tiny amount I can't tell) and that's great. However, my eyelashes and eyebrows decided to fall out now! I thought I managed to make it without losing them and I was so proud that they hung in there through all of my treatments, but they tricked me and fell out after I was done. I can count about three eyelashes on my left eye and maybe five eyelashes on my right. I was trying to make my eyes look better with mascara, but I've given up trying now. I've gotten pretty good at drawing in my eyebrows. Jeff says I should have fun with it and maybe draw one eyebrow up or something to look surprised. I was thinking I could draw both eyebrows in so I look shocked. That could be fun!

I've noticed a couple of other things that are just annoying: my calves are really tight and my ankles have swollen. I saw the doctor about my ankles and she thinks they might have swollen because I'm not used to sitting at a desk for 8 hours anymore and I haven't worn "work" shoes in quite a while. My ankles don't hurt, but they are quite large right now. My calves actually hurt and I'm having trouble walking. I think I just need to keep stretching and get a massage and the pain will go away. I lost a lot of muscle mass over the course of my treatment, so that's most likely the reason why my calves are so tight. I have started to work out with my trainer twice a week. I'm painfully slow and my balance is bad, but my abs are strong! I can see a little improvement in my arms and back because I've added about five pounds in weights in the past month. My recovery is going to be a long and slow process, and I've heard from various sources it can take up to a year to get back to "normal." I'll keep plugging away and working out because my goal is to play volleyball in my league next spring.

We're going away this weekend to our friend's parent's lake house down in Southern Virginia and I can't wait. We are bringing our boat and I'm going to see if I can water ski. I've never managed to actually get up on skis before, but I want to try again. I know my body may not cooperate, but I really have nothing to lose (except maybe a fingernail or two - they're all falling out now too) so I might as well try. Last summer, I tried for over an hour to get up on the darn skis, but my legs kept trying to go in two different directions. I'm eager to get back into life. If I can't do it, I'll swim or watch Mike water ski. I'm going to relax and have as much fun as possible.

Back at Work

I've survived being back at work so far. My first test of the day came in the ladies room when I ran into a co-worker who said hello, but didn't recognize me. I could tell that she had no idea who I was! I saw her again today and she apologized for not recognizing me on Tuesday, but I've noticed that some people recognize me right away and others don't at all and I have to "introduce" myself to them. I don't know if I'd recognize me either if I came back to work after five months with a totally new hairstyle and color so I don't blame them.

Once I found my cubicle that Pete had actually set up for me (thanks, Pete!), my first day was a whirlwind. I volunteered to be on a review team for a proposal so then I was off to a meeting to discuss the project. I was also busy catching up with everyone and visiting. I also had to figure out my computer password that the IT guys changed on me a couple of weeks ago. I actually noticed because I couldn't log in to my email at home anymore. Thankfully Pete had been involved in the password change so he had my new password handy. I also had to take care of a bunch of stuff for Honeywell and complete some paperwork and take their ethics quiz. I'm still sorting out my desk because Pete did a great job setting up my desk, but he (rightfully) dumped other stuff in my desk drawer. I had a lot of junk in there that I forgot I had. It was like doing a time warp back to March and April when I suddenly ran out of work and into a new realm of wacky cancer reality.

Speaking of time warp, I found a bunch of emails from March and April from me or to me discussing my doctor visits prior to my echocardiogram. I had been sick for a few months with what I thought was a nasty cold or possibly anemia or possibly exercise-induced asthma. It was strange for me to read them, knowing now that it was cancer and not anemia. As I read through these emails, I kept thinking about how naive or blissfully unaware I had been that something evil was in my body. I also read an email I had written to Melissa right after the cardiologist had called urging me to leave work immediately to get my first of many CT scans. I remember now that I wrote her because I was freaked out and afraid and also because I wanted someone to know what the doctor found on my echocardiogram. I sent her an email because I didn't want to call her and say I was scared because I would have fallen apart and been hysterical on the phone. I saved the phone calls for Mike and my Mom. I remember that day clearly, and I had no idea how my life would change by the next day when I was diagnosed. I've saved those emails for now, but I might delete them sometime in the future.

I will say one thing about being back at work: I am not used to getting up at 6am! I do miss sleeping in until 8 or 8:30am when Riley would wake me up so he could go outside. I am so tired when I get home and fall asleep quickly when my head hits the pillow. I need to get to bed earlier and that will help tremendously. Whew, it's tough!

It's Really Here

I start work again tomorrow. I'm a bundle of nerves and excitement in anticipation of the big day. I wonder who will be around and who doesn't work there anymore since we were acquired by Honeywell on July 1. I'll have to set up my new cubicle because when I left in April I had an office on the 4th floor, but my proposal group was all moved to the 3rd floor after the acquisition and everyone has a cubicle. Pete, our go-to-guy, was responsible for packing up all my stuff (and he had fun with the bag of marshmallows I kept in my desk drawer-for hot chocolate). I wonder if all of my stuff is still sitting in boxes from when Pete packed it?

I'm wearing my wig tomorrow just because I don't think my bandannas are office appropriate. The wig will be strange for me because I've probably only worn it five times. I really don't like wearing it because it doesn't look like me, but at least I won't look like a "cancer patient" at work. I will whip it off and put on my bandanna for the ride home, though! Mike thinks my hair is starting to grow, but I honestly can't tell. I have to admit that it's been nice not having hair in the summer heat and I'm "glad" that I got sick in the spring/summer versus fall/winter because I would prefer not to be bald when it's cold outside. Although, I'd prefer having my hot flashes in the cold weather rather than a day like today.

I started reading a book I checked out from the library called, "Dancing in Limbo, Making Sense of Life After Cancer," and it's helping me ease into this next phase of my life. I relate to a lot of what the authors are saying and found myself crying this afternoon for no reason at all. I think it's because I agree with them that I want to get back to normal, but my life will never be the "normal" I had before my diagnosis and I'm mourning that carefree life I had. It is weird to be a cancer survivor because I'm so grateful to be alive and thankful for everyone's kindness and generosity, but I'm not sure how to think or feel now that my treatment is over and I don't have to go to NIH twice a week. I can't even fully explain how I do feel to Mike or anyone because I don't know the words. It's like how my body feels now. I feel weak and my muscles aren't working properly, but I'm not winded. My body just feels tired more frequently. My legs don't want to work sometimes and I can't walk a straight line. It's hard for me, but I know it will take some time to become "normal" again. I just don't have much patience - I want my strength back now. :-)

Back to Work

This is it: my last day at home before I start back to work on Tuesday. I'm happy to get back to work and be productive and I'm looking forward to catching up with all of my co-workers. However, I'll admit that it's also been nice (when I was feeling well) to be home. Riley and Shelby will certainly miss having me around the house, especially when I can take Riley outside during the day. I also took Riley for short walks around the neighborhood, which I haven't done lately. I kind of feel like the kids who returned to school this week - summer "vacation" is over. Of course, I haven't spent the summer hanging out at the pool, the mall, or wherever kids hang out these days. Instead, I spent a lot of time hanging out at NIH. I'm so thankful all of that is over and I can now focus on becoming healthier overall. Going back to work is one part of that process - moving on with my life and returning to normal.

I just realized that I'm drinking out of my Wonder Woman glass and I think it's kind of appropriate. When I was a kid I loved Wonder Woman and thought she was so cool with her invisible jet and magic lasso of truth. Linda Carter was my hero once upon a time. My grandma used to check out the comic book from the library and I'd read it over and over again. Some fast food chain or grocery store in the 70s gave away the entire superheros collection of glasses (free with purchase of something) and my family had Aquaman, Superman, Batman, and some others. Grandma had Wonder Woman and I used to drink out of that glass every time I visited her. Unfortunately, she gave the glass away several years ago without knowing I wanted it. My friend Suzanne found another one on Ebay and bought it for me because I talked about the glass so much! At one point during my chemo treatments, I thought of Wonder Woman and how I wanted to be like her, but forgot all about until just now. I can be a Wonder Woman too! Sorry, but I'm not going to wear that skimpy outfit and boots; I'll just have a Wonder Woman attitude.
Hmm, wonder if I can find a t-shirt somewhere in my size?

Crazy Sexy Cancer

We saw an advertisement for a documentary that will be on TLC tomorrow night (our 9th wedding anniversary too) called, "Crazy Sexy Cancer." A 35-year old actress/filmmaker was diagnosed with a rare and incurable cancer in 2003 and she documents her story as she travels across the country interviewing experts in alternative medicine because traditional chemotherapy treatments won't work for her type of cancer. She has an unbelievable outlook on life and approaches this journery with a wild sense of humor. She says on her blog that she called the documentary, "Crazy Sexy Cancer" because she wanted to kick cancer in the pants, not glorify it. She says, "Cancer ISN'T sexy, the soulful women who have it ARE. We are warriors, angels, vibrant hot tomatoes and cancer cannot take that away from us. Cancer cowgirls are empowered, whole, thrivers with or without the disease."

We're going out to dinner for our anniversary tomorrow, but I've already set my Tivo to record this show. I'm fascinated by this woman who doesn't take her cancer diagnosis lying down and instead chooses to live her life despite cancer. Her website is crazysexycancer.com and I urge you to check out the trailer for the documentary - Mike and I were both in tears when we watched it - and then maybe watch the show. She also has a book called, "Crazy Sexy Cancer Tips" that I need to go check out in the book store. If it's good, I have a few fellow cancer "cowgirls" I should send it to for motivation and inspiration. I've read a lot of books about cancer and a lot of them are very serious. I think it's about time someone wrote something that isn't quite so serious and humorless. When you have cancer, sometimes all you need is a good belly laugh.

Now for a little segway... I have been thinking a lot about my fellow cancer warriors and I want Janine to know that I'm very glad her surgery went well and I hope they got took out all of the cancer. Michell, I hope your friend goes through her next rounds of chemo much better than she has been and I hope she feels better. Ice cream and popsicles always made me feel better! Jennifer Ray, my heart goes out to you and your brother. I am thinking about you and praying for you. I owe you a phone call, a letter, or an email. You were an inspiration to me when I needed it most and I want to return the favor. Melanie Pepper, my heart goes out to you and your mom. I am here for you if you need to talk about things or if you have questions about what she's going through. I am willing to talk to anyone because I want others to learn from my experience and to know that they are not alone.

Home Sweet Home

We arrived home around 8:30 pm this evening after fighting traffic just past Kings Dominion all the way to near Quantico. I hate Northern VA traffic...

We decided to hang out in the Outer Banks for a while today because we wanted to give all of the other beach traffic some time to get on the road ahead of us. The weekly rentals all leave at 10am so we decided to stay until at least noon and then mosey our way up the coast before heading out off the Outer Banks. We had a very nice breakfast at the B&B, but then every breakfast this week has been marvelous. I'm very glad I can eat salad and fresh fruit again because we had different fresh fruit for breakfast every morning. This morning we had something that tasted like cantaloupe, but didn't look like cantaloupe. It was delicious. We also had cinnamon streusel muffins, french toast, and sausages. Yesterday we had little eggs Benedicts in hard shells that were equally as delicious. I'm really going to miss breakfast and the 4pm cookies at the B&B!

We left the B&B around noon to drive up the coast. We stopped at the Pea Island Nature Conservancy to take a peak at the area. It was hot, hot, hot out there but we saw lots of Monarch butterflies and other butterflies, dragonflies, geese, swans, pelicans, and other waterfowl out on the sound. The sign said there could be bears, but we didn't see any and I'm rather glad. I doubt the bears would come anywhere near the walking trail anyway. I did wonder if there were any gators in the water, but I hadn't seen any gators all week so I wasn't worried.

We also stopped at the Bodie Island lighthouse to take pictures and see the lighthouse up close. We couldn't climb the lighthouse stairs to the top, but we were able to go into the base of the lighthouse and glance upwards. The lighthouse is still in operation because of the dangerous shoals off the North Carolina coast. The Outer Banks is also known as the "Graveyard of the Atlantic" because of the large number of shipwrecks that have occurred in the area.

We had an uneventful and no traffic ride home until we hit Virginia. We also ended up driving in the rain after we passed through Tysons Corner, which thankfully is only about 40 minutes from home. We saw some amazing lightning strikes before it started raining. We both think one of the lightning strikes hit the ground somewhere, but we weren't sure.

We're glad to be home, especially since we missed Riley and Shelby. We do miss seeing the Sound from our balcony though! Riley would have loved it down there, but neither place allowed pets. We saw lots of dogs on the beach, including one greedy little guy who really wanted the rest of my sandwich. I gave him the bologna and salami out of my sandwich and he went away, but then he came back later for the bread! We saw an 8 month old Golden Retriever yesterday who really enjoyed playing in the waves until one cracked on his head. After that he got out of the water and wanted nothing to do with the ocean! Mike really enjoyed playing tug-of-war with him. We also saw one beautiful cat roaming around the B&B, but he never got close enough for us to pet him. Oh well, we've got our own at home now who are definitely craving our attention.

Is it over already?

We are heading home tomorrow, even though I had convinced myself that yesterday was Wednesday instead of Thursday. We went jet skiing the other day on the Pamlico Sound and had a great time, despite only being able to go 40mph and being in a large roped off area. We're used to renting jet skis where they simply tell you, "See you in an hour." The Sound is so shallow here that you have to be in a roped off area so you don't beach the jet ski. It was still fun, but not as much fun as having all of Lake Meade outside of Las Vegas to play. We also took the kayaks out the other day and I was able to paddle for a while without getting too tired. I wasn't very good at paddling before I got sick so this was an experience, but Mike was a good teacher and I did very well.

We might be a little weird, but we went to watch the local high school girls play volleyball last night. The local girls creamed the competition in nearly every game. The third game was close, but the Cape Hatteras Hurricanes finally won. It was a good time.

We went down to the pier in Frisco today, which is about 15 minutes from our hotel. The waves are not as big as Okacroke and I was able to stay in the water for almost an hour. I still haven't really done any swimming in the ocean, but I wade in the water. I'm so weak that the waves make me a little nervous. We might go back this afternoon and I might try swimming with the boogie board.

I had a little cry on the beach this morning and I'm not afraid to admit it. I'm so thankful that I'm alive to appreciate the ocean, the waves, and the sand. I'm alive and I've survived cancer. I'm here in the Outer Banks, which is somewhere I've never been and I have the warm sun above me. It was merely a week ago yesterday that the doctors gave me a clean bill of health and I am thankful for being on the road to recovery.

Greetings from the Outer Banks

We are in Buxton, NC on Cape Hatteras, or the southern tip of the Outer Banks. We checked into our B&B this afternoon after staying on Okacroke Island for the past three days. Okacroke is a charming island where everyone either walks or rides bicycles. We stayed at a very interesting hotel right in the heart of the village across from the Silver Lake Harbor. Our hotel was definitely built in the 1950s and our room had dark wood paneling and a very "cabin-y" feel to it. It wasn't the most beautiful hotel, but we weren't in the room very often so we didn't care. We spent a lot of time walking around the harbor taking pictures of the boats and/or sunsets. We also spent a lot of time hanging out at the coffee shop because it seemed the place to be. The whole island has a very bohemian feel to it with some crazy college kids thrown in for good measure.

We went to the beach yesterday afternoon. I really like the beaches here because, unlike Ocean City and Fenwick Island, they are not crowded. We pulled off onto one of the public beaches and there were probably about ten people on the beach. My doctors recommended I wear aqua socks in the water because my toes are numb and I could cut myself without even knowing. I was glad we purchased them at Walmart for $4.00 on the way down here because there were lots of shells on the beach. My legs are not working properly yet and I'm having a hard time walking so I didn't go swimming, but I did wade out in the surf for a bit. Mike went out for a nice long swim while I took a nap.

Walking has been a bit of a struggle for me, as I said above. I can't walk very far and I can't seem to walk in a straight line either. I didn't realize I was this weak until I started walking around Okacroke. I'm making myself walk more each day to build my strength back up, but it is difficult. Stairs are really hard too and I had to walk up three flights of stairs to get to our hotel room.

I met another cancer survivor yesterday in town and we ran into her again at dinner. We exchanged information so we could check up on each other. She's a nine year breast cancer survivor and she was really pleased to meet me and talk to me about our different treatments. I was able to ask her about some of the things I've been experiencing lately and to ask her about when her hair grew back after chemo. I'm always so thankful or amazed when cancer survivors approach me to ask me about my story and then tell me their stories because it gives me hope. I would like to be the same way when I see another cancer patient. I saw a lady the other day, but didn't talk to her because at the time I was afraid I spread my virus to her.

Speaking of virus, my temperature has only hit 99.5 at the highest since I've been down here so I think the antibiotics are working. I'm still waking up drenched in sweat, but it is getting better.

Our B&B here in Buxton is gorgeous and right on the Pamlico sound. In fact, our room overlooks the sound. I've heard that our continental breakfast is to die for and have heard rave reviews about their raspberry stuffed french toast. I can't wait for breakfast tomorrow. They also have cookies and lemonade every day at 4pm, but we never saw the cookies today. We also have complimentary kayaks, bicyles, beach gear, and hammocks. This is certainly vacation!

Salad Days are Here Again!

I think this link is appropriate. Bop your head in time to the music - it'll put you in a good mood. http://www.nhlcyberfamily.org/special/happydance.htm

I called NIH this morning with some questions I didn't get a chance to ask yesterday and one of them was, "Can I eat salad and cheese now?" YES! Baby greens with blue cheese crumbles, bits of walnuts, and dried cranberries with a raspberry vinaigrette here I come!

She also said that my antibiotics should bring my fever down quickly. I'm taking 500 mg a day and I hope she's right because my temp hit 102 an hour ago. I'm also DONE with NIH, except for my CT scan - no more blood work twice a week, no more hospital stays, no more clinic days. Yay!

I've got to kick this new thing and then I can get on with my life. Oh, and I gained three pounds since last week. I'm at 129. I think vacation may help put a little meat on my bones. :-)

Ding Dong, Priscilla's DEAD

I think the title says it all. I'll let you read it a couple of times until the news sinks in a little.

The PET scan showed no living tumor - yayyyyyyyyyyyyyyyyyyyyyyy! I'm cancer free! I'm cancer free! My hair will grow back! My next step is to come back in three months for another CT scan to make sure Priscilla isn't trying to sneak back. I have a lot of questions for the doctors that I didn't get a chance to ask so I will call them tomorrow. My first question is, "Can I eat salad now?"

I had some minor bad news to go with this awesome news - one of the tests showed something on the two left nodes of my lungs. It's related to the virus and cough that I've had all week. I met with the Infectious Disease team this afternoon and was thoroughly interviewed and inspected. They think it's some sort of viral pneumonia and took a few tests just to be sure. They gave me some antibiotics and told me to call tomorrow if I'm still having fevers. I had a temperature of 102 this morning, but was completely normal at 2pm. I really want to kick this thing before we go on our vacation to the Outer Banks. The doctors said I should still go and have fun because I'm not deathly ill today, which I would be if it was something really serious.

It still hasn't hit me yet that I'm cancer free because I'm whirling from the viral pneumonia news. I'm trying to be excited, but this other thing kind of put a small black mark on my celebration. Maybe in a couple of hours I'll be jumping up and down with excitement. I called Gina and she was super excited so that definitely helped pump me up some more. I'm certain that once we get to Okacroke, NC on Saturday, I'll be really excited.

Still Sick

My temperature's been bouncing up and down from 98.6 to 101. I didn't wake up drenched in sweat this morning so I thought my temperature had gone down, but it was still 99 degrees. My cough is getting a little worse, which is what used to happen to me every winter. I used to get colds that would turn into a mild bronchitis and I'm hoping it doesn't happen this time. I have been through the ringer and now this happens. I'm very annoyed with this virus. I was prescribed an inhaler, which is what I normally get when this cough starts, but the order wasn't called into the pharmacy yesterday and we didn't want to wait and get stuck in traffic. Mike said he'll pick up my prescription today on his way home and I really hope it helps.

I still have my PET and CT scans tomorrow and I just hope I won't be coughing all over the place, especially because I have to hold my breath for a few seconds during the CT scan. I've been looking forward to tomorrow for so long and now this virus has me sidelined a bit. We're supposed to go on vacation on Saturday to the Outer Banks and I don't want to cancel the trip. I'm hoping this virus is all gone by tomorrow.

Bad Dad!

I felt fine over the weekend, but started to feel a little weak Sunday. I thought it was just my body still recovering from the hospital. I drank some water and took a nap and felt better after the nap. However, I was too weak to cook dinner so I coached Mike as he made Hamburger Helper. That evening I developed a cough and when we went to bed at 11pm, Mike insisted that I take my temperature because the cough concerned him. Imagine my surprise when the thermometer registered 102.3! I called NIH immediately and the doctor on call insisted I come in so they could take a blood test and determine if I was still neutropenic. I shouldn't have been because my ANC was 1,000 and I'd have to be below 500 to be neutropenic.


We arrived at NIH at midnight and it took a while for them to do the blood work and the nurse who was doing it wasn't exactly instilling confidence in me or Mike. She kept tapping my arm looking for a good vein and after several minutes, I asked if she wanted to look at my left arm. Mike was just about to insist that she leave when she found a good vein. I let her go ahead with the stick and she was much better than I expected. Unfortunately, we had to wait a while for the results. Around 1am we heard the charge nurse yell, "Oh my gosh, they're 12,000!" We knew she was talking about me and I definitely wasn't neutropenic. The doctor came by later and said they would give me Tylenol to bring the fever down and send me home. We arrived home at 2am and went straight to sleep.

I woke up early Monday morning and this morning drenched in sweat and I had soaked through my sheets and comforter. I managed to put down a towel underneath me to cover up the dampness and sleep with a towel above me as my sheet. The sweating meant that my fever had broken (thanks to the Tylenol), but I couldn't sleep very well because I was soaking wet. I don't really like going through the "Tylenol cycle" because at first I freeze, then I burn up with heat, and then an hour later I sweat buckets.

My blood cultures came back negative and the doctors all think it's a cold that will go away eventually. I just have to drink plenty of fluids and take Tylenol for the fevers. Mike talked to Dad today and he went to the doctor with a fever of 101. Hmmm, my Nurse Practitioner and all of the NIH nurses are sure he gave this to me. He came to visit me last Tuesday at the hospital when I was neutropenic, but he probably didn't know he was coming down with something. Mom is in denial.

Just when I thought I was done being sick for a while...

Last Shot!

I'm looking forward to receiving my last G-shot tonight. I'll get my blood tested tomorrow to know if I'm really done, but I usually don't get shots past Sunday and my white count was really high on Friday when I left the hospital. I have a ton of medicine that I don't know what to do with that I don't think I'll need anymore so I need to ask if I do need it and how to dispose of it if I don't.

Thursday is the day I get tested to find out if Priscilla is gone for good. I should know the results around 2pm when I meet with my team for clinic day and I'll post the news when I get home. I am trying to gear myself up for either bad or good news so I'm not devastated if it's not great news and trying to be hopeful that it is good news. It will be good news to a degree because Priscilla had shrunk by nearly half on my last CT scan and I had at least two more chemo cycles after that. I am confident that she has shrunk even more, but am not sure if she hit the road or there's just one centimeter left to fight.

Mike is taking me on a much-needed vacation on Saturday to celebrate the end of my treatment and hospitalizations and to give me a chance to be somewhere other than here where I can relax for a week. We're going to Okacroke, NC for the weekend and then Hatteras for the rest of that week. Okacroke is supposed to be a really slow-paced island where people drive electric golf carts and sit out on their front porches. This is pretty much all I have the energy for right now. I tell you, I am weak today and am having a hard time mustering up the energy to walk. I'm really looking forward to spending some time alone with Mike and sitting on a hammock chair watching the world go by. It will also be nice to be away somewhere and not really have to think about cancer for a few days. I promise to have a good time, even if my news is not 100% good on Thursday.

I received an email from my volleyball league today asking if I'm playing this fall and I had to tell them no. I definitely don't have the energy for volleyball. I'm hoping my doctors will clear me to take water aerobics this fall because that's good low impact cardio. I think they will because I brought it up last week when I was in the hospital and they didn't see a reason not to, but they wanted me to ask my full team on clinic day. I know I can't rock climb for a while for several reasons and one of them is simply because my fingers and toes are numb and my fingernails look like they could fall off at any minute. This is another side effect I found out about as I went through treatment. I hope to regain the feeling in my fingers and toes in about a month.

Night Nurses

I'll tell you about my night nurse experience after I tell you that I'm home and my ANC was over 1,000 this morning (the magic number is 500). Wesley, the phlebotomist, told me this morning he heard I was going home and I said I didn't know yet, but he was holding the magic ticket in his test tube! Obviously it worked out and I don't know who was happier about the news - me or my team when they told me this morning. I have a bit of sad news too. Dr. Byrd, one of my Irish boys, is leaving NIH on Wednesday and heading up to Sloan Kettering hospital in New York for a few months before moving back to Ireland. Dr. DunLeavy is the dreamy one, but Dr. Byrd and his sweet accent will be missed. He is the first doctor I met with at NIH before I was officially on the EPOCH protocol.

On to my night nurse story that I have to tell because I'm still annoyed even though Mike isn't. The night shift starts around 10, but when I fell asleep I hadn't met her yet. I knew she'd be coming in around 1am to administer my antibiotic through my IV. The previous night nurse had done the same, but I wasn't worried since it's simply come in and hook me up to my IV and then unhook me when it's done.

However, I was not thrilled when nurse Judy walked in my room at 12:30am. I've had her before and she just annoys me and after last night I really don't like having her as my night nurse. At first, she tried to be a good nurse and opened the bathroom door for light instead of turning on the main light since Mike was sleeping. It went downhill from there when she asked me if I knew whether the previous nurses had administered my antibiotic over 15 or 30 minutes. I didn't mind her asking and told her I thought one nurse had commented that she'd be back in my room in 30 minutes when it was done. Judy decided to push it over 30 minutes because she didn't want to blow my vein, which the thought just gave me the chills, so I heartily agreed. However, she then told me that if she did blow my vein, either she or a number of other night nurses could start a new IV, but she could do it because she was bored. She complained that the other nurses were busy and she only had my antibiotic to do so she was really bored and had nothing to do. She asked if she could sit on my bed while she hooked up my IV, remarked how comfortable my air mattress was compared to the regular hospital bed, chatted on about programming the IV machine, asked what "that noise was" that she kept hearing even though I couldn't hear it, and told me not to touch my IV site because I could pop the needle out. Apparently, a lot of men do this, but I assured her that I wasn't touching my IV site. I never touch my IV site. I am AFRAID of needles and I'm not messing with it. I really like hearing this stuff at nearly 1am! Keep in mind that 1) she's scaring me now and 2) Mike's trying to sleep. She finally left the room for about 30 minutes, but I definitely didn't go back to sleep. Judy came back in the room and unhooked me from the machine and chatted with me about some other stuff while I muttered uh-huh or uh-uh. I wanted her out of my room so I could sleep for a few hours. She finally left and I somehow managed to go back to sleep, but it was difficult.

At 5:55am, Judy was back dragging the hospital scale, banging into the door on her way into the room, and startling both me and Mike awake. She insisted on turning on the main light so she could weigh me, which other nurses have managed to use the bathroom light to read the scale. (As a side note, I lost two pounds this week and am at 124. Rest assured, I will gain it back.) She took my vital signs and started complaining about how she tried waiting for the phlebotomy guy, whose name she said she couldn't remember even though she had worked there five years, to show up on the unit. I told her his name, Wesley, which I knew even though I've only been going to NIH since April! She then complained about how Wesley was normally on the unit at 5:45 on Mondays, but noticed that he got there later and later as the week progressed.

I know Wesley and I also know that Wesley starts his shift around 5am over on 3NW because I was over there one time and asked him because he woke me up at 5:15 to draw blood. When he's done there, he heads over to 3NE. He may have had a lot of patients on 3NW this morning. She was shocked when I said Wesley didn't hit my room until 6:45 on Wednesday and asked me if I knew why he was so late. Um, no. I was actually trying to point out that he's not there all the time right at 6am, but I think it backfired. Mike decided to get up and get ready for work early because he couldn't sleep through all of her talking and complaining and I felt really bad. Not only was she blabbering, but she was using a normal daytime voice and not being very quiet so he could sleep.

When Wesley arrived at 6:10, I told him we had just been talking about him and mentioned that Judy had complained that he was late (even though he wasn't). He remarked that he couldn't be superman and I suggested he clone himself - one Wesley for each wing. I laughed heartily when Wesley said Judy thinks she knows everything! I think that about sums up nurse Judy. She was my nurse one evening during my second hospital stay who was really upset that Mike had brought me a heating pad from home because the hospital heat packs stink and I was in a LOT OF PAIN. She was up in arms that I hadn't gotten the heating pad inspected by someone at NIH because, as a cancer patient, I could burn myself since I'm more sensitive to heat. Luckily, I had been smart enough to notice the medium setting was a little too hot and I had put it on the lowest setting.

I'm glad to be home! I won't even go into my annoying nurse Paula story because Judy topped her. However, Paula is the number one reason I am now terrified of IVs because she was my nurse that terrible night when I got stuck four different times. She just annoyed me on a minor level this time.

Double or Nothing

My ANC (absolute neutrophil count) was just 9 yesterday, which is the lowest I think it's ever been. Today it's at 23. The magic number for me to go home is 500. Traditionally, it picks up tomorrow and just hits 500 on Friday. I'm hoping to repeat history so I don't have to be here through Saturday.

I had a little bit of a rough night last night. The nurse took my temperature at 1am and I was running a fever. The deal is that if I run a fever, they have to take my blood cultures (every 24 hours). The last time I had been cultured was midnight the day before because of my late check in time so I had to have blood drawn from both arms. Poor Mike was sleeping, but the nurse had to turn the light on so she could see. I was happy that she could use my IV to draw blood so I only had to get stuck once, but Mike wasn't happy about being awakened at 1am. He's pretty tired today. I went back to sleep after he left for work (and after phlebotomy came in to draw blood at 6:40).

Dad came to see me today, which is pretty monumental since he hasn't been able to drive until last week. He goes back to work next Monday, but he's still moving around with a cane. He's got a handicapped tag for at least another month. Unfortunately, he wasn't paying attention at the front gate and got in the wrong line with the people who don't have badges. If you have a badge, they wave you to the left and then on through. He had to go through the whole security line. I should have told him about the side entrance off Old Georgetown road, which is even faster.

I'm feeling a little more energetic today. I slept a lot yesterday and fell asleep by 9pm too. I just could not stay awake, but it's probably because my ANC was so low. The doctors finally got on the ball and have agreed to give me anti-nausea medication twice a day because I get too nauseous to eat otherwise. Of course, my oatmeal this morning wasn't really worth eating! I often wonder how they mess up the food so horribly. I mean, oatmeal is oatmeal. They must buy generic because it definitely wasn't Quaker Oats! I've got to call for my lunch and I'm so excited about my prospects. Maybe I'll just have a sandwich - they can't mess that up too badly. Right......?

I'm at NIH and Riley's at Camp Barkalot

My temperature spiked at 100.4 and then 100.9 last night so I had to get to NIH. Mike was still at volleyball with Riley so I called my mom. Mike called be back and said he was on his way home so my Mom turned around and went back home. I then arranged for Blair to pick up our big redheaded golden retriever and take him to camp with his dog, Wylie. Mike arrived home shortly thereafter and we finished packing for our trip here. Mike was starving after volleyball so we stopped at McD's first (I was impressed with the McDs in Rockville on 355 - they totally redecorated it and it looks really nice. It's too bad we could NOT understand the guy at the drive through. At one point, I thought he asked if we drove a VW Jetta.)

Anyway, we finally arrived at NIH at 9:45pm. I went to the inpatient unit and they said they had a room ready for me, but some lady was in my room who was not even a patient. They were confused and asked who she was and it turns out that her daughter is staying in the ICU and she was staying in my room. The nurses quickly worked to get a new room ready for me, but I had to wait a while. They took my blood pressure, pulse, and weight while I waited. I weigh 126.8 pounds - neither losing weight since last time nor gaining weight - I am STABLE!! (okay, at least just my weight is stable, I can't speak for the rest of me ;)).

We finally checked into our luxurious new digs at NIH and the bathroom hadn't been cleaned so I had to call for housekeeping. I told every nurse I saw that I needed a very experienced person to start my IV because I'm terrified. Several nurses were honest and said they wouldn't be doing it. I also met with the doctor on call, Dr. Huang, after my temperature returned to nearly normal. I asked if I could return home and come back today, but she said no.

I had a very difficult time last night because of all the waiting - waiting for someone to stick me with an IV, waiting to go down to Admissions, waiting to get a chest x-ray, waiting for my medications. In the end, Nurse Richard did my IV and he was so good that I didn't know until Mike told me this morning that he also drew blood cultures too. I mentioned to my NP this morning that no one from phlebotomy showed up this morning and Mike said that Richard had already done it. I kept getting my medication a little at a time and I was tired so I kept dozing off while I waited. I finally got my G-shot at 2:45am. They also started me with antibiotics last night for about 30 minutes, but then took me off the IV, which they don't normally do. For once, I was free to sleep without worrying about an IV pole leash.

This morning I woke up thirsty and had asked for some water last night, which no one brought. The morning nurse brought me a teeny cup of ice water because she said she wasn't sure what the doctors were going to put in for my nutrition orders. When NP Karen McGinn arrived, I complained about everything to her and she got my water, made sure my orders were put in so I could order breakfast, and genuinely apologized for all of the craziness. Karen McGinn is smart and funny and always willing to take care of me and Mike. She's a bright spot here at NIH.

Riley is having a great time at Camp Barkalot and the first thing he did was eat all of Wylie's food and then Wylie ate his. Blair will keep them busy I am sure, but I'll post some of his musings from camp.

Neutropenic

I went to NIH this morning for my blood work and, as I expected, they called about two hours ago to let me know that I neutropenic. I had a feeling because I've been feeling a little weak today without much energy. The woman made me laugh a little because she first asked if I was on cycle six (yes) and if I'd ever been neutropenic before (yes, every cycle). Then she started telling me a bunch of stuff I already know (if my temperature hits 101.0, call and come in immediately, don't change the cat's litter box, don't each fresh fruits and vegetables, etc.) I know the drill by now and I've been following the rules this whole time. The nurse who called me last cycle was much more with it than this lady!

My temperature has been up and down since yesterday and I'm just hoping to keep out of the hospital until tomorrow. I had a close call last night, but then my temperature dropped from 100.3 to 99.5 and I was safe for the night. I have my bag packed because I just know I'll be going to the hospital sometime. I'm drinking my fluids so when they do have to put an IV in me, I'll be hydrated. Meanwhile, I'm resting on the sofa because my energy level is really low and it takes a lot just to walk from one room to the next. I just wish there was something better to watch on tv!